CHAT: EXCITING ANNOUNCEMENT

March 12, 2006

Hello everyone! I have missed you all so, so much. I hope everyone

is well – I have not been able to keep up with everyone's posts –

BUT – I have some exciting news to share with you.

No – I'm not pregnant! LOL

SUPPORT is an incredibly significant expression or desire for

encouragement that at times may not always be prevalent in a

person's life; specifically relating to RSS – sometimes due to lack

of familial support, friends, or even non-existent or remedial

physician recognition. Sometimes SUPPORT can be found in many

places when the aforementioned connections are not available – such

as an internet support group, clubs, non-profit foundations, church

and others.

I've always believed that there can always be an opportunity to

support someone in need and there doesn't have to be only one option

for which to access support. For this reason – I have developed

with the support, encouragement, participation, and guidance of some

very dear friends another support group website - and you all know

these wonderful women: Jodi Z, Debby B and Jodi R.

I hope you will take the opportunity to come visit our new Support

Forum at http://www.-SilverSupport.com

Those of us who created this website realize the importance of just

being there for someone else. We have learned what it means to be

with, and more importantly, without, support. We understand the need

for support. It is our goal to be the support for others that we all

so desire to acquire during our lives as we manage our children with

Silver Syndrome.

Hope to see you soon!!! We are LIVE starting tonight!!

Fondly, and always thinking of you – Advocate (H)

<excited grin> PS - I'll be at the site if you want to say hello!

March 12, 2006

I am incredibly disappointed with the contents of this email.

I have been a member here for over 4 years, over that time I have

learnt everything I need to know about RSS, I have been supported, I

have had opinions that have been accepted AND not accepted. I have

agreed with opinions and disagreed. Never once have I felt I couldnt

have an opinion or say how I felt. MOST importantly I have never

forgotten the reason I am here on this site is because of my son who

has Silver Syndrome.

If we as parents fragment everytime one of us doesnt agree with the

other, I believe there will soon be many RRS support groups. I wish

this new group well and hope that it is achieves what it sets out to.

My disappointment is the suggestion that support specifically

relating to RSS is not found here. That is exactly what is found

here. Perhaps support of other issues in an RSS parent/relatives

life is not.

I see this site(RSS yahoo) as an international community of RSS

children and their families. I hope it continues to give information

and support, in an enviroment willing to listen to anyones views.

Jody(mum to Liam (RSS) and cameron)

>

> Hello everyone! I have missed you all so, so much. I hope

everyone

> is well – I have not been able to keep up with everyone's posts –

> BUT – I have some exciting news to share with you.

>

> No – I'm not pregnant! LOL

>

> SUPPORT is an incredibly significant expression or desire for

> encouragement that at times may not always be prevalent in a

> person's life; specifically relating to RSS – sometimes due to

lack

> of familial support, friends, or even non-existent or remedial

> physician recognition. Sometimes SUPPORT can be found in many

> places when the aforementioned connections are not available –

such

> as an internet support group, clubs, non-profit foundations,

church

> and others.

>

> I've always believed that there can always be an opportunity to

> support someone in need and there doesn't have to be only one

option

> for which to access support. For this reason – I have developed

> with the support, encouragement, participation, and guidance of

some

> very dear friends another support group website - and you all know

> these wonderful women: Jodi Z, Debby B and Jodi R.

>

> I hope you will take the opportunity to come visit our new Support

> Forum at http://www.-SilverSupport.com

>

> Those of us who created this website realize the importance of

just

> being there for someone else. We have learned what it means to be

> with, and more importantly, without, support. We understand the

need

> for support. It is our goal to be the support for others that we

all

> so desire to acquire during our lives as we manage our children

with

> Silver Syndrome.

>

> Hope to see you soon!!! We are LIVE starting tonight!!

>

> Fondly, and always thinking of you – Advocate (H)

>

> <excited grin> PS - I'll be at the site if you want to say hello!

>

March 13, 2006

Jody,

I have to say that I agree with you! I have been a member of this list for

over 3.5 years, and I have found it to be a supportive, caring and

informative community. I have made lifelong friendships.

Bran is now 4, and his issues are no longer life threatening. But back in

the beginning, I don't know what I would have done without the knowledge and

support I received from this wonderful group of people.

It saddens me to think that this wonderful group of people might become

fragmented because of a difference of opinions. I, too, wish this new group

success, but I hope that they will still feel free to participate here as

well.

Pat (g-ma to , RSS, 4yrs 2m old, 28# 10oz, 35 " , G-tube, GHT)

March 13, 2006

>

> I am incredibly disappointed with the contents of this email.

_________________________________________________________________

I'm sorry you feel that way.

__________________________________________________________________

I have been a member here for over 4 years, over that time I have

learnt everything I need to know about RSS, I have been supported, >I

have had opinions that have been accepted AND not accepted. I have>

agreed with opinions and disagreed. Never once have I felt I couldnt

have an opinion or say how I felt. MOST importantly I have never

forgotten the reason I am here on this site is because of my son who

has Silver Syndrome.

____________________________________________________________________

No one is suggesting otherwise.

___________________________________________________________________

> If we as parents fragment everytime one of us doesnt agree with the

> other, I believe there will soon be many RRS support groups. I wish

> this new group well and hope that it is achieves what it sets out to.

___________________________________________________________________

That's not why this site was put up. Actually, it was my suggestion

in February. I have the capabilities to design and institute a site,

the server space, and just thought it was a natural evolution that

would provide knowledge that is currently not available. For

instance, pictures of tubes and why one is used over another. The

site is in its infancy. Hopefully we can continue to grow over time

and be helpful.

_____________________________________________________________________

> My disappointment is the suggestion that support specifically

> relating to RSS is not found here. That is exactly what is found

> here. Perhaps support of other issues in an RSS parent/relatives

> life is not.

____________________________________________________________________

That is, of course, one of the reasons for the new forum. There is a

place there to discuss non-RSS issues. It's easy to avoid if you

don't want to become involved.

Yahoo Groups is not user friendly. You can't ignore things readily.

You can't readily pick and choose what you want to read. You can't

quickly and readily catch up on posts you are following. If you read

it in email it can be a horrendous task.

I also understand the concern about fracturing. But I think the two

groups can ride the waves side-by-side. There's something in it for

everyone. And they are two different mediums, allowing different

things to happen in different ways.

_________________________________________________________________

> I see this site(RSS yahoo) as an international community of RSS

> children and their families. I hope it continues to give information

> and support, in an enviroment willing to listen to anyones views.

___________________________________________________________________

I certainly hope that it does carry on for many years into the future.

For as long as RSS continues to baffle parents and science.

Dianne - Grandmother to Ian

March 13, 2006

Good luck with your new group.It looks very well organized. Beautiful

stories. I can't speak for all, but I felt as though I was intruding

on someone's private conversation when I try to ask a question on this

site.(I don't post often). Anyway, now that there is a site for " other

chats " , I see it as the best of both worlds. I think it's great! Take

care, Molllison, Raven (age 5 RSS)

March 13, 2006

I'm with you! I've been on the new site and found it very informative. I found

the g-tube information especially helpful and could relate to alot of it. I

will be taking advantage of both sites. Lately, my daughter has been doing

pretty well, and I have been busy with other projects and dealing with family

issues, so I have been silent for a while. I've just been reading the posts and

keeping up with what's going on with everyone. I've also been praying for all of

our kids, there has been so much going on with them.

Anyway, I'm glad that there is finally more information out there. I love

what the MAGIC foundation and this group has done for me and now I have another

group for even more support.

Let's stop this arguing back and forth and just be here for each other.

Sheldon Sime wrote:

Ok People lets all stop for a second and take a deep breath. Now than, this is

just my opinion and know one else's so please tear me up if you want but know

one else. Ok than i think we are all adults here and the reason we are here is

to seek help with questions we may have about our children and Grandchildren and

to carry on a friendship we have made with one another whether it be about RSS

or not. Come on people life is to short for this kind of garbage. Just think

about what the kids are dealing with. This was and still will be a great site

for all to enjoy. But what is wrong with another site for us to enjoy. Do we

only have one gas station in town or one grocery store in town or one restaurant

in town to enjoy. No i don't think so. So than let's just forget about the past

for we cannot undue it and concentrate on what we can do and that is to find as

much information we can for our kids whether it be here or somewhere else and do

not condem someone for branching out ok. No

one is asking anyone to change site's. Heck join them both. Than you can chat

like crazy with 2 site's. Ok i said my peace now let's just all have a group hug

and smile for we never know what tomorrow will bring.

Sheldon(G-Pa to Laikyn,RSS,G-Tube, GHT, and other stuff i don't understand) from

the Great State of North Dakota

Re: CHAT: EXCITING ANNOUNCEMENT